Thank you so much for your encouraging words. They mean a great deal to me. I am glad we went ahead with the chemo. My husband is in the hospital tonight for the second round of a three week cycle with the Cisplatin and Gemzar. It is suppose to be a one nignt stand. As I am alone tonight I especially appreciate your words and thoughtfulness. We are hoping for the best and trying not to think numbers and statistics. Our oncologist is quite upbeaat and encourages us to enjoy life especially during the off week from chemo (the third week in the cycle).
I'm sorry your brother was unable to have the surgery but who knows keeping his bladder at this time may work out well for him. I certainly hope so. We are learning to live one day at a time and savor our good times together. I've heard this often happens when cancer is in the picture.
When my brother was diagnosed with Stage 4 locally advanced bladder cancer in May 2006, there were many % tossed around. We didn't need to hear the numbers, what we needed and wanted to hear was someone who would give him a chance.
We found an oncologist who offered hope of remission and my brother started chemo- gemzar and taxol (because of an underlying fear of reflux from the ileal conduit into the kidney they didn't choose cisplatin) in June. By the end of the first 6 or 8 rounds of chemo the scan showed no growth- a big positive in scan lingo. At the end of the next 6-8 rounds again no growth on the scan but with the added plus that the nodes were now negative, this was August.
My brother then came off chemo due to an unrecognized big time depression. When that was addressed and with the results of the scan he went back to surgery right before Christmas to try to remove his bladder. This was not possible for a number of reasons, but the scan done prior to the surgery without chemo for 8 weeks showed no change.
Although he faced a great deal of fatigue from the chemo- the neupogen and procrit- helped him to bounce back. He fell into a predictable routine in the days following each treatment. We realize now some of the fatigue was the worsening of the depression. He is recovering now from the surgery and anxiously waiting for the next step.
No one has a crystal ball. Each patient responds differently and no one can predict beforehand what will happen. My brother has an incredibly positive attitude and is a fighter- I think that is 3/4 of the battle. He also has his Estrogen Posse- mother, sisters, daughter, nieces, wife- to urge him onward. If we had listened to the numbers instead of pursuing other opinions and options, we would have been attending a wake instead of surgery in December. I'm glad your husband chose chemo. It's definitely worth a shot.
My husband had an Indiana pouch, by the way. His urologist prescribed the Mandelamine.
I am a bit baffled by your oncologist not using scans (at all? Or just at this stage of treatment?); I am not sure how he will evaluate your husband's disease without using them but maybe there is something new out there of which I am not aware! My husband had many CT/PET scans (the machine did both at the same time).
The statistics really had nothing to do with my husband's disease and how it progressed; I know that these numbers are general guidelines, but it seems to me that 15% might be statistically significant.
Thanks for your response to our question. My husband did go ahead and start chemo. He finished his first round of Cisplatin and Gemzar with 3 more to go. this week is his week off. We did question the doctor again and he held to his earlier response of an increase in no reoccurance by 5 to 15%. Without chemo, reoccurence happens in 65% of cases in his situation. This is how my husband and I interpret the statement. No PET scan because the only drawback to our excellent oncologist is he doesn't believe in scans. We will worry about that one down the road.
Sounds like chemo worked really well for your husband. I am going to look into the Mandelamine you suggested. Thanks for the suggestion
I am surprised that the oncologist would not be more encouraging about chemo. My husband had carboplatin, taxol, and gemzar over the course of 5 years and they pretty much held his cancer at bay. He started chemo after his bladder cancer meta-ed to his lung in 1997; he had to stop chemo in 2005 because his liver was no longer able to metabolize the chemo (he had hepatitis unrelated to his cancer).
I know this is a hard time to run around finding information, but if I were in your shoes, I would talk to the oncologist or perhaps another one (in the same practice?) and hone down this 5-15% comment. Another thing to keep in mind is that when we are talking to a doctor, sometimes we don't hear exactly what was said! Try to get the "5 to 15%" statistic in context. Is the cancer elsewhere? Has a PET scan been done?
As for infections, my husband took Mandelamine twice a day and had only one bladder infection in ten years (and that was toward the end of his life when he was quite weak). It sounds like your chemo decision is being influenced by the possibility of increasing chances for infections; again, discuss with a doctor what the antibiotic choices are in the event of an infection.
My hat is off to you Greg. While I don't know if your response will make the decision easier, it certainly will enable us to move to the cognitive rather than the emotional which is an easier place to be. My husband and I both appreciate the thought that you put into your post to us. Many thanks.